Inclined Bed Therapy

[AndrewKFletcher]

An article for the Multiple Sclerosis Resource Centre's New Pathways Magazine, about Inclined Bed Therapy is going to feature reports and results from people using I.T.

We are hoping many of the people on this forum who are trialing I.T. will contribute to this article.

Terri Harrison has agreed and has been using I.T. for almost 12 years.

Andrew

[AndrewKFletcher]

http://www.andrewkfletcher.com/index.ph ... &Itemid=30

We have read many reports on the Inclined Bed Therapy threads from people who now sleep inclined. Most of which are positive and those that are not responding as quickly as others will be comforted by your continued progress and updates.

However, as the threads grow, tracking each person's progress over many months will inevitably become more complicated and many of your valuable reports will not be read by people following the progress of others.

The CCSVI tracking thread has addressed this forum problem by setting up a tracking thread here: http://www.thisisms.com/ftopict-8346.html

This is a very simple but highly effective method of reporting improvements for not only stent and angioplasty procedures. It works just as well for Inclined Therapy.

During the recent interrupted service of the forum being down. I have realised that it is very foolish to solely rely on Thisisms to provide a permanent home for your highly appreciated help and continued regular progress reports.

Reasoning:
The second pilot multiple sclerosis study was conducted on a message board called Insidetheweb.com. was producing identical results to what we are all witness to, right here in these few threads relating to Inclined Therapy. Insidetheweb was the place to have a message board and considered to be watertight.

They closed the facility down, leaving the second pilot study without a home. At the time, I had no idea how to move a message board to another site. (Still don't) But managed to retrieve the database file that contained a lot of the published reports.
I then moved these to a google group called Inclined_to_sleep_inclined. The same name as the pilot study message board. <shortened url>

It would be a disaster if this happened again!

I need your help to compile a progress journal in order to bring all of your results and reports together with an outline of your health problems and ms symptoms so that your progress can be followed more easily and the data can be analysed using the familiar scoring system shown in the CCSVI tracking thread and now on the intro post on the New Forum.
The first post on the new forum contains a proposed outline for reporting. This is not set in stone so any advise and suggestions about simplifying it for ease of use will be most welcomed.

Using both thisisms and http://andrewkfletcher.com forums makes a lot of sense for safeguarding this important data.

I need your help now with this transition

First of all we need one report example on a new topic in the tracking journal section.

We also need a moderator or six

Kind regards

Andrew

[AndrewKFletcher]

http://www.andrewkfletcher.com/index.ph ... &Itemid=30

Algis has helped to provide an excellent example of the format required for tracking progress using I.T.

Look forward to reading and following all of your progress journals.

Please use your reports from Thisism together with dates if you are already using I.T.

Easiest way is to copy and paste them all in and then edit the posts to remove questions etc, so they relate directly to any changes noted.

Andrew

[Algis]

Thank you Andrew; but I merely followed your sample and adapt as I could my TIMS data in.

I am convinced we can find a better way to quantify effects, but I will elaborate on that on your website; if that is agreeable with you; not to jam TIMS forum with my essays

@All: I invite you that uses or intent to use IBT to get to Andrew's site and participate in the tracking in the forums over there. The more data; the easiest it'll be for him to model a standard form and input your observations/results

Cheers and be well !!

[hwebb]

Hi Andew,

I've been doing IBT for ~14 weeks now - so I'm just under the 4 month mark. Some interesting things have happened this week though. Sine June 2009 I have had an incredibly stiff neck, and haven't been able to use a regular pillow. But this week my neck seemed more flexible...and I started using a low-rise pillow (I've been trying each week - without success until now). Feels the most comfortable I've been since June 2009. I remember you saying that after 4 months of IBT I should notice some inprovements.
It is possible that my fish-oil regime is also having an impact. I've been taking fish oil (tablets, or real oily fish) since November 2009. This week, I noticed that my blood suddenly seemed a lot thinner (I know this cause i use copaxone, so inject every day). Never used to bleed when I inject - but now I bleed for a couple of minutes. I see this as a good thing, as the thinner my blood is...the more likely it'll go through my narrow neck veins!

Anyway - Im sticking with IBT

hwebb

[AndrewKFletcher]

Hi Hwebb

Now we need to introduce some regular light repetetive exercises to your daily routine.

Object is to build upon the new ease of movement in your neck.

Also get into the habit of adding an extra cushion to raise your seat a little higher during the daytime, There are some wedge cushions availabe that take the dip out of seats to bring your bottom level or above your knees when viewed from the side.

This might sound like it won't have much affect but trust me it makes a huge difference.

Andrew

PS Start a journal on the new forum by opening a new topic in same section as Algis.

Follw Algis's example as close as possibe.

[thisisalex]

Andrew,
as i promised:

male, 35, Hungary, Europe
RRMS since 2ooo
very mild relapses, 1 per year
on copaxone for 2 years (no relapses since then)
EDSS 3

current symptoms (before IBT):
reflux
sexual problems
UTI
voiding problems


on IBT (5 inch) for 4 months now, and feels really great!

first night on IBT: the most relaxing sleep for 5 years!
2 weeks: i remember my dreams. (or i dream again)
after 3 weeks: realized i dont have to go to the bathroom 3 times a night
after 4 weeks: no UTI! at all
no night sweats anymore (before IBT my pillow was wet )

do you happen to have some kind of solution for reflux? (i mean in the gut not in my head )
just good news, nothing bad since on IBT
thank you very much Andrew for your great work, i appreciate it very much

best regards
alex

[Vhoenecke]

My young daughter had reflux and we give her probiotics. They have really helped her. They make for good digestive help. My husband also has acid reflux but gets drugs from the doctor. I really recommend probiotics from the health food store. Take care.

[AndrewKFletcher]

Andrew,
as i promised:

male, 35, Hungary, Europe
RRMS since 2ooo
very mild relapses, 1 per year
on copaxone for 2 years (no relapses since then)
EDSS 3

current symptoms (before IBT):
reflux
sexual problems
UTI
voiding problems


on IBT (5 inch) for 4 months now, and feels really great!

first night on IBT: the most relaxing sleep for 5 years!
2 weeks: i remember my dreams. (or i dream again)
after 3 weeks: realized i dont have to go to the bathroom 3 times a night
after 4 weeks: no UTI! at all
no night sweats anymore (before IBT my pillow was wet )

do you happen to have some kind of solution for reflux? (i mean in the gut not in my head )
just good news, nothing bad since on IBT
thank you very much Andrew for your great work, i appreciate it very much

best regards
alex

Raise your bed another inch for Gerd and see if this sorts it out.

He may have lactose intollerence? Use soya milk instead of cows milk to see if this is the problem.

Pepermint tea instead of meds is a great help too. Despite what the profession have published 3-4 cups a day to start with.


And PLEASE PLEASE PRETTY PLEASE WITH KNOBS ON. We really do need everyone using I.T. or considering using it to collect their ms history and progress posts and compile a tracking journal on my forum so that people can easily follow everyones progress.

If there is something wrong with this approach to collecting data, please let me know so I can fix it?

Not a lot to ask for 16 years of my life helping people to recover from ms and for FREE is it?

Follow Algis's example

Link at bottom of this post

Andrew

If you have not done so please vote on the Posture Poll.
http://www.thisisms.com/ftopict-9774.html

[thisisalex]

Andrew thank you for your answer.

I think people wont go to another forum an register themselves there... they cant even fill out your simple poll here...

and there is a problem with your another forum: How will you match people? There are a lot of finished poll here, if someone goes to your new forum how will you know if he is a new user or an existing user here at TIMS?
at the end you will have to restart your tracking thread from scratch on your forum and you will lose all your results here
(of course i will go over there! )

an idea: it would be better to have a more defined tracking template. Fixed questions with scored answers
for example:

your fatique after IBT: worse 1 neutral2 good3 better4 cool5

it would be better to compare them at the end. Why dont you develop an index, like for example EDSS which is for describing the IBT effectiveness in a person?
do you need help for that?
just brainstorming...

alex

[AndrewKFletcher]

Hi Alex

It would be easy for people to provide a link back to their original Tims Posts in order to confirm their reports.

I agree with your scale for improvements and this was used by John Simkins MSCR in the first pilot study for the Raised Bed Survey Report. The scores were included in tables.

The problem with having a before and after score is that I.BT. is usually something people will adhere to. After experiencing significant improvements, it is unlikely that there will be an after IBT assessment. The alternative being the flat bed that caused the problems.

The answer should be to have one of these self-assessments performed every 6 months. But as you say, it may be difficult to find people with ms who are willing to help with even modest input requests. This is precisely why I adopted the informal approach on Thisisms Forum.

And now we begin to understand why it has taken 16 years to get this far.

That said, I am pretty certain that once a few more people add their Tracking Journal to the new forum, confidence will grow as it did in the second pilot project on the Inclined To Sleep Inclined Message board.

[Exscouser]

Hiya Andrew,

I have really tried to keep a positive slant on my posts as I am 100% behind this therapy, but my back problems are going from bad to worse

I spent 4 weeks at 4" (my back was giving me problems, but I could see other benefits so decided to stick with it and go up to 6" anyway, which I did a couple of weeks ago.

My back (dodgy for 30+ years and pre-dates the ms) is very bad currently.

Regardless of whether I sleep on my back or my side, I am suffering restless legs, back spasms in the form of electric shocks which are inevitably keeping me awake all night and resorting to painkillers, which I don't like to do. My feet and ankles are extremely swollen also (new symptom since starting IBT)

My improvements are that my lower legs are much warmer in bed, and also I am much less likely to visit the bathroom nocturnally.

My husband meanwhile is having complete success with IBT so I didn't want to start fiddling with the heights, but do you think that going back to 4" for a while will be helpful in this case? I feel like such a failure, but I don't think I can handle not sleeping for much longer.
Thanking you in advance

Elaine

[AndrewKFletcher]

Hi Elaine

RE: swollen feet and ankles has this happend since tilting your bed or since elevating it further? If they are swelling at night, use support stockings to assist the removal of the oedema temporarily to see if this resolves the problem.

There is an initial shift of fluids towards the ankles where excess fluid is stored in the body.

The fact that varicose veins are pulled back to normal looking veins over a month or so tells us that that the pressure inside the veins has changed. This is important with regards to oedema as oedema is fluid that has entered the tissue surrounding the veins because the pressure inside the veins has increased greater than the pressure beneath the skin so fluid moves from the veins into the skin.

The opposite should be the case on IBT. So I am intrigued to find out why you are experiencing more oedema.

This may have something to do with veins closing in the neck, though I do not have access to equipment to dermine whether this is the case or not.
Hense, I have asked people lined up for a scan to have the same tests at an angle of five degrees.

Thinking is that the greater angle might not be right for your particular circumstances. How do your ankles and feet look before getting out of bed in the morning? Try lowering the bed 1 inch.

While not sleeping are you sitting up reading or out of bed sitting?

What are the painkillers contraindications?

The electric shocks in the spine, wrestless legs and spasm increses were reported in both pilot studies and led to significant improvements later. These were also reported by people with spinal cord injuries though it took longer for this stage to happen.

It is quite common to get pain first before a gain uisng IBT. Usually these pains are electrical and described as sharp stabbing pains that are not always in the same place.

Your spine is under gentle traction every night. It may be that the increase in height in your particular case applies a little too much traction to the spine? What problem do you have with your spine? (medical name)

Elaine. Telling it how it is more useful for us to understand what is going on.

Thanks for your Very interesting post.

Andrew

[Exscouser]

Hi again Andrew, thanks for your swift response.

I am sure that it is part of a 'healing crisis' that I am experiencing, just didn't expect it to last as long (or be as painful)

I have taken everything on board that you say regarding the oedema. Whilst my feet and ankles had sometimes swollen pre IBT this had been resolved so it was quite a surprise to see that they are once again swollen subsequent to IBT. I can't quite work that one out, although it does seem to go 'hand in hand' with back pain with me? They are still swollen this morning, just slightly less so.

I have been reluctant to take any painkillers, but tried Prescription strength Voltarol (Diclofenac) at the weekend, I won't be taking any more.

At the risk of sounding a complete wreck The back problems (medical terms) that I have are left sacroiliac dysfunction, which started after the birth of my boy 32 years ago and has never managed to resolve effectively (Physio didn't help, Chiropractic didn't help and I have refused corticosteroid injections and Diazepam) A slight scoliosis at L3, and Osteoarthritis at L4/L5, oh, and restless leg syndrome.

My difficulty on rising or transferring currently means that a sudden back spasm effectively cuts my legs from beneath me, and makes it impossible for me to get up again without outside assistance

I spend my days in an electric wheelchair, but am very mindful to have my bottom higher than my knees, in fact I never use the footplates (much to the OT's horror) because I can and do still stand and transfer quite well, so it is much more convenient for me to use that way. I remain much more 'active' doing that so I believe it can only be a good thing?

I try and use a vibe-trainer for 5 minutes daily to keep the strength at least going in my legs.

I only take supplements, no prescription drugs and am wholly convinced that ultimately I am trying to correct many years of sleeping incorrectly, and I'm not about to give up now, although I might just try reducing the height by 1" tonight and hopefully wait for my back condition to at least stabilise.

Many thanks again for your thoughts Andrew, sorry for the epistle

Elaine

[AndrewKFletcher]

Sitting posture:

Idea: When sitting in your whelchair, you are still in the bucket type seat designed to prevent you from falling out. By lowering the legs off the footplates, you are inevitably compressing the muscle and tissue under your thighes where they come in contact with the front edge of the wheelchair cushion and seat.

Could this be the cause of the oedema? To determine if this is the case try sitting on a chair / couch and raise the seat by placing an extra cushion, or folded blanket on it to remove the dip caused by your weight will sitting.

Also check for tight socks around the ankles (the eleastic at the top is usually doubled over)